Models of care to address disparities in kidney health outcomes for First Nations people
Authors: Samantha Bateman, Michael Riceman, Kelli Owen, Odette Pearson, Rhanee Lester, Nari Sinclair, Stephen McDonald, Martin Howell, David J. Tunnicliffe, Shilpanjali Jesudason
Journal: Kidney International (2023)

First Nations people of Australia, New Zealand, Canada, and the United States of America (USA) share a common history of European colonisation with forced disconnection from land, community, and culture. While reconciliation strategies differ between the four nations, lasting colonial effects of institutional racism, disproportionate social disadvantage and disparities in health outcomes persist. Decades of consultation with First Nations communities evaluating the problem and government interventions aimed at addressing this disparity have yielded little improvement. Chronic kidney disease (CKD) represents a particular challenge when considering the burden of ill-health amongst First Nations people. First Nations people are more likely to develop kidney failure and are less likely to receive a kidney transplant than their non-Indigenous peers. Treatment of kidney failure requires a high level of engagement with mainstream health services, which can be hostile and discriminatory environments. As part of the evidence synthesis to inform an inaugural guideline on clinically and culturally safe management of CKD for First Nations Australians1Tunnicliffe D, Bateman S, Arnold-Chamney M, et al. Recommendations for culturally safe and clinical kidney care for First Nations Australians. Sydney, Australia: CARI Guidelines. 2022. Available from: https://www.cariguidelines.org/first-nations-australian-guidelines/.Google Scholar, this review aimed to identify studies that delivered First Nations specific health interventions that included, or could be embedded, as models of care to improve health outcomes for First Nations people with kidney failure in Australia, New Zealand, Canada and the USA. This work was informed by an extensive process of First Nations community consultation2Hughes J, Mick-Ramsamy L, Mills P, et al. Summary report, Darwin, catching some air–asserting Aboriginal and Torres Strait Islander information rights in renal disease. Darwin: Menzies School of Health Research. 2018. Available at: https://www.menzies.edu.au/icms_docs/307210_Catching_Some_Air.pdfGoogle Scholar,3Kelly J. Stevenson T. Arnold‐Chamney M. et al.Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.Australian and New Zealand Journal of Public Health. 2022; 46: 622-629Crossref PubMed Scopus (0) Google Scholar,4Kidney Health Australia. Executive Summary 'Yarning Kidneys' Community Consultations. Melbourne, Victoria. 2020. Available at: https://kidney.org.au/get-involved/advocacy/aboriginal-and-torres-strait-islander-peoples-1Google Scholar and prioritised First Nations governance and research methodologies (Appendix 1). First Nations specific quality appraisal tools5Harfield S. Pearson O. Morey K. et al.Assessing the quality of health research from an Indigenous perspective: the Aboriginal and Torres Strait Islander quality appraisal tool.BMC medical research methodology. 2020; 20: 1-9Crossref Scopus (89) Google Scholar,6Huria T. Palmer S.C. Pitama S. et al.Consolidated criteria for strengthening reporting of health research involving indigenous peoples: the CONSIDER statement.BMC medical research methodology. 2019; 19: 1-9Crossref PubMed Scopus (141) Google Scholar were used in addition to Cochrane methods to comprehensively critique the quality of evidence. To ensure adherence to the ethical principle of First Nations self-determination7Australian Institute of Aboriginal and Torres Strait Islander Studies. AIATSIS code of ethics for Aboriginal and Torres Strait Islander research. 2020. Available at: https://aiatsis.gov.au/sites/default/files/2020-10/aiatsis-code-ethics.pdf.Google Scholar, consistency of the evidence with well-established First Nations community voice2Hughes J, Mick-Ramsamy L, Mills P, et al. Summary report, Darwin, catching some air–asserting Aboriginal and Torres Strait Islander information rights in renal disease. Darwin: Menzies School of Health Research. 2018. Available at: https://www.menzies.edu.au/icms_docs/307210_Catching_Some_Air.pdfGoogle Scholar,3Kelly J. Stevenson T. Arnold‐Chamney M. et al.Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.Australian and New Zealand Journal of Public Health. 2022; 46: 622-629Crossref PubMed Scopus (0) Google Scholar,4Kidney Health Australia. Executive Summary 'Yarning Kidneys' Community Consultations. Melbourne, Victoria. 2020. Available at: https://kidney.org.au/get-involved/advocacy/aboriginal-and-torres-strait-islander-peoples-1Google Scholar was considered when grading certainty. The full systematic review, including methods (Appendix 2) and complete results (Appendices 3-5) are in the supplementary document. From a comprehensive systematic review considering all health care interventions specific to this population we identified only 8 models of care, evaluated by 14 studies (Supplementary Figure S3.1) specific to First Nations people living with kidney disease (Table 1S1-S14). Study quality through a First Nations lens was variable (Figure 1). Risk of bias in quantitative studies ranged from moderate to critically high. Quality of qualitative and economic studies was fair. Full details of study quality are in Appendix 4.Table 1Study characteristicsStudyStudy design and settingParticipantsStudied Model of CareOutcomes measuredAnderson 2020S1Qualitative studyNative American living in tribal communities across a Northern Plains state in the USA55 Native Americans currently undergoing dialysis treatment at one of three dialysis centres either on or near reservations who had been exposed to the "Hope and Healing" campaign"Hope and Healing" co-created, culturally sensitive health education and promotion campaign (video and booklet) around living kidney donor transplantationFrequency, content, and consequences of patients' discussions regarding living kidney donation.Britt 2020S2Community-based participatory action researchOnline community199 social media posts targeted at Native Americans with kidney failure, their families and communities"Sharing Hope and Healing", a co-created, culturally sensitive health education and promotion, social media campaign around living kidney donor transplantationDegree of engagement with campaign; enablers of engagement.Cho 2014S3Retrospective cohort studyRegional renal unit, Cairns, Queensland75 Aboriginal and/or Torres Strait Islander patients who received a PD catheter inserted using the Y-Tec peritoneoscopic techniqueMultidisciplinary team approach including an Aboriginal Liaison Officer; Nephrologist inserted Tenckhoff cathetersPeritoneal dialysis catheter and technique survival ratesEarly dialysis complication ratesReturn to Homelands ratesConway 2018S4Qualitative interview studyRegional and remote South Australia (SA)15 Aboriginal and/or Torres Strait Islander patients who have had to relocate off country for dialysis.10 nursing staff who have worked on the mobile dialysis unitMobile dialysis unit (dialysis bus / truck)Patient and staff thoughts and opinions regarding the mobile dialysis service; enablers and disablers of successful service.Dingwall 2021S5Randomised controlled trial (3 arm)Urban dialysis unit, NT, Australia156 adult Aboriginal and/or Torres Strait Islander patients receiving maintenance HD for more than 6 months.Stay Strong Wellbeing App: a First Nations specific, culturally adapted, digital application (App) of strength-based, patient centred, low-intensity psychological therapy, empowering First Nations cultural values and self-management adapted for the kidney failure setting and presented in local First Nations languages.Changes in degree of psychological distress (Kessler Psychological Distress Scale) and depression (Patient Health Questionnaire-9)Gorham 2019S6Micro costing analysisWhole of renal service, NT, AustraliaAll patients receiving dialysis in the NT, AustraliaCommunity controlled, nurse supported, remote area dialysis serviceCost effectivenessGorham 2021S7Cost analysisWhole of renal service, NT, AustraliaAll patients in the NT who received dialysis for more than three months continuously.8 patients excluded due to absence of cost data.Community controlled, nurse supported, remote area dialysis serviceCost effectivenessKirkham 2019S8Participatory Action ResearchUrban dialysis services, NT, Australia6 Aboriginal and/or Torres Strait Islander patients requiring maintenance HD who resided in DarwinFirst Nations reference group integrated into kidney health services through direct feedback loops to health service leadership and policy steering committeeDegree of stakeholder participation and health service responsivenessMarley 2010S9Retrospective registry cohort studyRegional/remote dialysis unit, Western Australia (WA)110 Aboriginal and/or Torres Strait Islander patients; Kimberley origin221 Aboriginal and/or Torres Strait Islander patients; rest of WA502 Aboriginal and/or Torres Strait Islander patients; NT origin733 Aboriginal and/or Torres Strait Islander patients; rest of Australia13273 Non-Indigenous AustraliansCommunity controlled, nurse supported, remote area dialysis serviceMortalityMarshall 2013S10Retrospective registry cohort studyUrban dialysis services, NZ4,709 incident adult patients on dialysis in NZ. 34.5% Māori.Community-based home haemodialysis: urban house, owned and maintained by patient support group, with home dialysis machines used by patients. Accessible to patients and families.MortalitySicotte 2011S11Interrupted time series cohort studyRemote Cree communities, James Bay region, Canada.19 adult Cree residents of two remote communities receiving conventional HD for at least nine months (pre) and tele-haemodialysis for at least another nine months (post)Primary care supported tele-haemodialysis service where consultation between nephrologist and patient is conducted via videoconference, supported by on-site dialysis nurse or general practitioner.Dialysis attendanceMedication changesMedical evacuation ratesMortalityThomas 2002S12Community-based participatory action researchSalt River Council Region, USANot reportedOrgan Donation and Kidney Transplant Education Committee of community members, clinicians and government/council stakeholders which designed culturally sensitive educational materials and trained tribal members to disseminate the information.Health care provider reflectionsTreacy 2002S13Interrupted time series cohort studyUrban hospital, NT, Australia161 HD patients who underwent AVF surgery during the study period.74.5% Aboriginal and/or Torres Strait Islander.Multidisciplinary vascular access team. No Aboriginal and/or workforce role.AVF patency and revision ratesWalker 2019S14Qualitative interview studyUrban community HD units, NZ25 kidney failure patients who had received or were receiving community house HD.40% MāoriCommunity-based home haemodialysis: urban house, owned and maintained by patient support group, with home dialysis machines used by patients. Accessible to patients and families.Thoughts and opinions of patients regarding the community-based home haemodialysis modelNotes: HD; haemodialysis, PD; peritoneal dialysis, AVF; Arteriovenous fistula, NT; Northern Territory, WA; Western Australia, SA; South Australia, NZ; New Zealand, USA; United States of America. Open table in a new tab Notes: HD; haemodialysis, PD; peritoneal dialysis, AVF; Arteriovenous fistula, NT; Northern Territory, WA; Western Australia, SA; South Australia, NZ; New Zealand, USA; United States of America. Community controlled, nurse supported, remote area dialysis Clinical effectiveness and cost effectiveness of community controlled, nurse supported, remote area dialysis models were assessed in three Australian studiesS6, S7, S9 (Table 2). Marley 2010S9 found this model of dialysis care was safe, with no mortality difference for 110 Aboriginal and/or Torres Strait Islander patients receiving remote area dialysis when compared to all Aboriginal and/or Torres Strait Islander patients (adjusted mortality ratio (AMR) 1.05 (95% CI 0.91-1.21)) and to non-Indigenous Australians (AMR 0.8 (95% CI 0.51-1.23)). Gorham 2021S7 established that higher median costs of treatment/patient/year of remote dialysis are offset by lower hospital costs resulting in lower per patient health expenditure. The greatest cost saving was $15,118/patient/year for very remote dialysis model compared to relocation to an urban dialysis facility.Table 2Summary of findingsModels of Care for First Nations people living with kidney diseaseStudies contributingRisk of Bias (tool used)First Nations quality assessmentCoherence/ ConsistencyImprecision/ AdequacyDirectness/ RelevanceCertainty of evidenceCommunity controlled, nurse supported, remote area dialysis models are clinically safe, with no mortality disadvantage, and allow people to have dialysis on their Homeland.Marley 2010Moderate (ROBINS-I)No concernsFinding consistent with community voice1 safety study (Australia)Very LowCommunity controlled, nurse supported, remote area dialysis models are cost effective when total health expenditure is considered.Gorham 2021No concerns (CHEERS)No concernsFinding consistent with community voiceLowGorham 2019No concerns (CHEERS)No concernsUrban community-based home haemodialysis is a safe model, which does not increase mortality when compared to conventional home haemodialysis.Marshall 2013Moderate (ROBINS-I)Some concerns#Variable First Nations populations; no subgroup analysisVery LowUrban community-based home haemodialysis is acceptable to First Nations communities and may reduce the treatment burden of in-centre dialysis.Walker 2019No concerns (COREQ)Some concerns1 study (NZ)Variable First Nations populations; no subgroup analysisVery lowAdopting a primary care supported, telehealth model of dialysis care does not lead to health disadvantage in term of clinical outcomes or mortality. Telehealth should be considered as an option to augment traditional face-to-face care.Sicotte 2011Moderate (ROBINS-I)Concerns#Finding consistent with community voice1 study (Canada)Study in remote Cree patients onlyVery lowMobile dialysis units may facilitate return to Homelands and have important psychosocial benefits for patients and community. However, successful uptake of mobile dialysis requires local accommodation, transport, and sufficient workforce support.Conway 2018Some concerns (COREQ)Concerns#Finding consistent with community voice1 study (Australia)Very lowIncluding First Nations health workers within dedicated multidisciplinary teams may improve outcomes for First Nations people commencing dialysis beyond standard care.Cho 2014Critical (ROBINS-I)Significant concerns#Finding consistent with community voice1 study (Australia)LowThe delivery of culturally adapted, First Nations specific, social and emotional wellbeing programs to patients who are on dialysis may decrease distress and improve wellbeing.Dingwall 2021High (RoB2)No concernsFinding consistent with community voice1 study (Australia)ModerateIncorporating First Nations feedback directly into mainstream renal service policy and planning allows for meaningful First Nations consumer driven change and improves health service responsiveness and professional capacity building.Kirkham 2019No concerns (COREQ)No concernsFinding consistent with community voice1 study (Australia)ModerateCommunity based education and awareness campaigns that are co-created with First Nations communities can increase community awareness and acceptance of transplantation, including living and deceased kidney donation.Thomas 2002Unable to be assessedSome concerns#Finding consistent with community voiceModerateBritt 2020Unable to be assessedSome concernsAnderson 2020Some concerns (COREQ)Some concernsNotes: #; studies published prior to availability of quality appraisal tool, ROB2; Risk of Bias 2 tool (randomised studies), ROBINS-I; Risk Of Bias In Non-randomised Studies of Interventions (non-randomised studies), COREQ; Consolidated Criteria for Reporting Qualitative Research (qualitative studies), CHEERS; Consolidated Health Economic Evaluation Reporting Standards (economic evaluations) Open table in a new tab Notes: #; studies published prior to availability of quality appraisal tool, ROB2; Risk of Bias 2 tool (randomised studies), ROBINS-I; Risk Of Bias In Non-randomised Studies of Interventions (non-randomised studies), COREQ; Consolidated Criteria for Reporting Qualitative Research (qualitative studies), CHEERS; Consolidated Health Economic Evaluation Reporting Standards (economic evaluations) Urban, community-based, home haemodialysis was assessed by two studiesS10, S14. This model addressed barriers to home dialysis, including inadequate housing and/or utilities, by providing home dialysis facilities in a supported environment. Outcomes included mortality compared to other dialysis models and patient/staff acceptability (Table 2). Marshall 2013S10 showed an AMR of the model similar to conventional home haemodialysis (AMR 1.48 (95% CI 0.64-3.40)) and lower than facility haemodialysis (AMR 2.18 (95% CI, 1.78-2.67)). Walker 2019S14 reported major themes of reducing burden on family, increased flexibility and freedom, control over one's own health and increased community supports associated with the model. A tele-haemodialysis model whereby consultation between nephrologist and patient is conducted via videoconference, supported by on-site dialysis nurse or general practitioner (GP), was evaluated in a single Canadian interrupted time series study across two remote First Nations communitiesS11. There was no significant reduction in quality of care with implementation of the model, no deaths and no difference in dialysis attendance or hospital transfer. There was reduction in medication changes (8.1 changes/month pre-intervention to 3.1 changes/month post-intervention p=0.01) at the site where the model was supported by a GP. Patient and staff acceptability of a mobile dialysis unit was evaluated in one Australian studyS4. This model facilitated return to traditional homelands for patients dislocated for treatment. Patients reported improved happiness and quality of life and enhanced relationships with staff. Factors affecting successful, equitable implementation of the model include provision of accommodation, transport, and sufficient workforce support. The benefits of a multidisciplinary dialysis access team approach (now considered in many centres as a standard of care), for First Nations people commencing dialysis in an urban centre, was considered in two Australian studies from 2000S13 and 2014S3. One study, Cho 2014S3, involved First Nations health care workers within the team. Both studies reported an improvement in clinical outcomes, specifically AVF patency and 12-month peritoneal catheter survival consistent with the benefits seen in the general population. The benefits seen by Cho 2014 S3 extended beyond standard clinical outcomes, to the provision of culturally appropriate dialysis education, established rapport and communication channels with remote primary health care facilities and a notable proportion of patients (60%) returning to their home communities after an average time of 33.9 (± 5.9) days. Dingwell 2021S5 assessed the effectiveness of a culturally adapted, First Nations specific wellbeing digital application (App), modified for use in First Nations people on dialysis in northern Australia. The App used an evidence-based form of "low-intensity" psychological therapy developed specifically for use in remote Australian First Nations communities. The holistic, strengths-based approach promotes First Nations cultural and family values and empowers patient self-management. It was adapted to the kidney failure population and made available in 11 different local First Nations languages. The App had a significant impact for those with pre-existing symptoms of psychological distress at baseline, with a clinically significant improvement in scores relating to both depression at 3 months (mean score difference −4.1 (95%CI −6.4;- 1.8)) and 6 months (mean score difference −4.7 (95%CI −7.0;-2.4)) and psychological distress at 6 months (mean score difference −6.8 (95%CI −10.2;-3.5)). A single qualitative study addressed cultural responsiveness of health systems in Northern AustraliaS8. In this model a First Nations reference group had direct access to health service leadership through a continuous feedback loop, whereby First Nations opinions and priorities were presented, by reference group members, to the health service integration steering committee. It showed that direct involvement of First Nations consumers in policy and planning decisions allowed for meaningful, First Nations consumer-driven change and improved health system responsiveness and professional capacity building. There were three studiesS1, S2, S12 of community health promotion campaigns aimed at increasing the rates of transplantation for First Nations people in the USA. Each model differed (video and booklet; social media campaign; whole of community approach) but all had a consistent approach of co-creation and delivery with First Nations communities. Each study reported different outcomes with a common theme of increased awareness of transplantation resulting from each campaign. For decades, the voices of First Nations people have described the devastating impacts of kidney failure on their communities. Across the globe, communities have identified priorities and proposed solutions which include addressing First Nations health workforce and providing holistic, culturally safe care close to home (Figure 2). Despite the established knowledge that current systems of kidney care fail to meet the needs of First Nations people, scientifically rigorous studies of models of care addressing First nations priorities remain extremely limited. This review identified only 14 studies of eight models of care, with variable study quality. Study quality through a First Nations lens improved over time, particularly in community consultation and governance. Weaknesses in study design and data sovereignty persist. The role of peer reviewed publications in upholding standards of ethical First Nations research continues to evolve and is essential to ensuring research equity. Underpinning this work is an extensive process of consultation with First Nations Australians2Hughes J, Mick-Ramsamy L, Mills P, et al. Summary report, Darwin, catching some air–asserting Aboriginal and Torres Strait Islander information rights in renal disease. Darwin: Menzies School of Health Research. 2018. Available at: https://www.menzies.edu.au/icms_docs/307210_Catching_Some_Air.pdfGoogle Scholar, 3Kelly J. Stevenson T. Arnold‐Chamney M. et al.Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.Australian and New Zealand Journal of Public Health. 2022; 46: 622-629Crossref PubMed Scopus (0) Google Scholar, 4Kidney Health Australia. Executive Summary 'Yarning Kidneys' Community Consultations. Melbourne, Victoria. 2020. Available at: https://kidney.org.au/get-involved/advocacy/aboriginal-and-torres-strait-islander-peoples-1Google Scholar. The results are diverse; yet several themes, consistent with the international literature, are common across all communities. Some were addressed, in-part, by the models of care identified in this review. Social, emotional and cultural wellbeing of First Nations Communities relies upon 'profound bonding of people to one another [and] to their Country [homelands]'8The Wardliparingga Aboriginal Research Unit of the South Australian Health and Medical Research Institute. National Safety and Quality Health Service Standards user guide for Aboriginal and Torres Strait Islander health. Australian Commission on Safety and Quality in Health Care, Sydney, Australia. 2017. Available at: https://www.safetyandquality.gov.au/sites/default/files/migrated/National-Safety-and-Quality-Health-Service-Standards-User-Guide-for-Aboriginal-and-Torres-Strait-Islander-Health.pdfGoogle Scholar. Models addressing the need for treatment to be available close to home include community controlled, remote dialysis models, mobile dialysis services and community-based home haemodialysis. All were found to be safe, cost-effective, and/or acceptable to staff and patients. Institutional racism and rigid mainstream health services contribute to inequitable health outcomes for First Nations people. Health service redesign must be First Nations-led and culturally responsive to address these and other impacts of colonisation. Dialysis services incorporated within community-controlled health services adhere to the principle of self-determination, empower communities to take ownership over their health and allow for service provision in a culturally safe way. Embedding First Nations reference groups into mainstream health services with direct access health service leadership and influence on health care policy and planning improves health service responsiveness. This direct and integrated approach provides an opportunity for meaningful First Nations consumer driven change. Increasing the number and presence of First Nations health workers has been proposed as a mechanism for improving care for First Nations people since the 1990's. Inclusion of First Nations team members has been shown to improve the cultural safety of the broader health system but the extent of their impact within multidisciplinary kidney care teams has not yet been established. Were First Nations health workers included as valued and essential members of multidisciplinary dialysis and transplant teams, the ability to positively engage with First Nations communities is likely to be increased and outcomes improved. First Nations people have resilience and tenacity in dealing with an overwhelming burden of illness within their communities and in accessing and navigating health systems that are racist and discriminatory. The psychological and emotional distress associated with kidney failure and dialysis, are best addressed through programs developed by and for First Nations people. Incorporating First Nations specific programs into routine, holistic care, beyond what is currently delivered, is essential to address the impact that chronic disease has on the community. First Nations people living with kidney failure are disempowered in pursuing transplantation as a treatment option. Considering the extent of inequity, few studies considered models of care designed to improve access to or outcomes of transplantation for First Nations communities. Multimedia and social media health promotion campaigns had a positive impact in raising awareness of kidney transplantation, specifically living donor transplantation, among American Indian communities. Preliminary results of a yet to be published multi-faceted health service project in New Zealand reported increased rates of living kidney donation9Beechey D. Marshall M. Talreja H. Live Kidney Donation Aotearoa - Improving Live Kidney Donation in Indigenous and Migrant Populations in South Auckland, New Zealand.Kidney International Reports. 2019; 4Google Scholar, and we await further peer review. In Australia, the National Indigenous Kidney Transplantation Taskforce is working to enhance data collection, evaluate cultural bias and pilot initiatives to improve patient equity and access10D'Antoine M. Owen K. McDonald S. National indigenous kidney transplantation taskforce (NIKTT): an update.Transplant Journal of Australasia. 2021; 30: 5-6Google Scholar, but is yet to report its final outcomes. When reflecting on the limitations of this work, we acknowledge that while the need for this review arose from consultation with First Nations communities, many of the research team are non-Indigenous and bring unconscious biases to the work. We ensured First Nations researchers were involved in every part of the research design and process and the research team worked proactively to build First Nations research capacity within the group. All data synthesis and interpretation were taken back to a First Nations community reference group for checking. The research team is based in Australia and our First Nations team members are Aboriginal and/or Torres Strait Islander. We acknowledge the limitations in extrapolating our findings and interpretation to other First Nations communities, however we are confident that the learnings can be adapted to local contexts and cultures to improve the care of First Nations people of colonised countries globally. Finally, multiple abstract only publications were excluded from data synthesis due to a lack of outcome data, increasing publication bias with this review. The barriers preventing these studies from progressing to peer review and publication must be explored and addressed to ensure equity in research impact for First Nations communities. The ongoing impacts of colonisation for First Nations communities and the subsequent health inequities, including kidney failure, are well known. This review found few methodologically rigorous, First Nations specific studies of models of care to improve outcomes, despite the persistent call from community for change. The existing evidence supports treatments close to home, culturally responsive care, First Nations workforce, managing the psychological impacts of disease and inclusion of kidney transplantation as a treatment option as potential determinants of achieving equitable outcomes. Given the long-standing inequities faced by First Nations people of colonised countries, the paucity of research is not acceptable; as researcher, funders, and health care providers – we must do better. Health care services and research institutions must fund and support First Nations-led research of co-created First Nations-led studies to achieve the greatest benefit for First Nations people. We acknowledge the First Nations people of Australia, New Zealand, Canada and the USA who retain ownership of the data used within this review and who are custodians of the land on which they and we live and work. We acknowledge the AKction reference group for their contributions to this work and for their commitment to improving the lives of their peers through their dedication and advocacy. We acknowledge Kidney Health Australia and the Caring for Australians and New Zealanders with Kidney Impairment (CARI) Office for their contribution to the development, interpretation, and dissemination plan for this review. Download .docx (.86 MB) Help with docx files This manuscript has been presented in abstract form at the American Society of Nephrology Kidney Week 2022 and the Australian and New Zealand Society of Nephrology Annual Scientific Meeting 2022.